Standardising the Collection of Socio‐Demographic Data in Pain Research

We begin this letter by acknowledging the European Journal of Pain's commitment to promoting inclusion, diversity and equity in pain research and upholding the pain field to rigorous standards of integrity in research conduct (Palermo et al. 2025; Palermo et al. 2023). In this correspondence, we draw the attention of your readership to the recent publication of our author group in Lancet EClinicalMedicine: ‘Identifying Social Factors that Stratify Health Opportunities and Outcomes (ISSHOOs) in pain research: Consensus recommendations for the collection and reporting of equity-relevant data’ (Karran et al. 2025b). This manuscript details globally relevant, consensus-derived recommendations for use in human pain research that are closely aligned with the principles and values your journals promote. The ‘ISSHOOs project’ was driven by recognition of the importance of improving standards of collecting and reporting equity-relevant socio-demographic information in pain research. We set out to develop consensus on what data to routinely collect and how to collect it, and foresee many benefits of the recommendations that have ensued. In particular, routine collection and reporting of the minimum dataset will facilitate more comprehensive and consistent descriptions of who is in studies (and who is not) and inform interpretations about the generalisability of study findings. Crucially, by drawing researchers' attention to the role of social factors in pain experiences as well as issues of inclusivity and diversity in research practice, the ISSHOOs recommendations have the potential to advance progress towards greater understanding and action on health inequities for people with pain. The methods we applied acknowledged the need for rigorous and careful development of a globally relevant resource that is highly useful, adaptable and easy to implement, irrespective of researchers' focus and context. The ISSHOOs project involved the insights and perspectives of more than 300 international, interdisciplinary experts and interest-holders in a multi-stage project spanning 3 years. We included individuals from 45 countries across six continents, 46% of whom had a lived experience of persistent pain. Two scoping reviews (Karran et al. 2023a, 2023b) informed a Delphi study (Karran, Cashin, Barker, et al. 2025), which we followed with a consensus meeting process, involving interdisciplinary experts from six continents. Contributors included patient partners, clinicians, pain researchers, pain journal editors and pain-association leadership, whose backgrounds ranged across diverse research approaches and fields. Consensus was reached on two distinct datasets that were then tested in international focus groups involving pain researchers, patients and public representatives. The ISSHOOs recommendations are the main outcome of this work. They contain a detailed operationalisation of socio-demographic items organised across Set A and Set B, and provide information considered key to facilitating their implementation. ISSHOOs Set A, the minimum dataset, includes eight items that are recommended for inclusion in all human adult pain research: age; sex; gender identity; place of residence; race, ethnicity and/or cultural identity; education; financial position; and work status. ISSHOOs Set B includes 30 optional items relating to a broad range of social, economic and environmental circumstances considered to be important determinants of pain and health outcomes. Researchers are encouraged to select a subset of these items depending on their specific research questions, study population and research settings. The datasets are accompanied by brief information for researchers, guidance for item tailoring (or in some circumstances, item omission) and they incorporate recommended preambles for research participants (for inclusion in questionnaires) to promote understanding and completion. Researchers can access the ISSHOOs recommendations in the published manuscript (Karran et al. 2025b) or at www.isshoos.org. Translations into the official languages of the World Health Organisation are in process and will be available on the website, where researchers can also download ISSHOOs Set A and Set B, and find accessible files for use on REDCap and Qualtrics survey platforms. A separate ‘explanation and elaboration’ manuscript (Karran, Cashin, Chiarotto, et al. 2025a) was also produced as a companion manuscript to increase understanding of how and why to adopt the recommendations, and provide an overview of the uses and benefits of the ISSHOOs data. Social factors are currently inadequately and inconsistently collected in health research, and it seems important to shift the status quo. The ISSHOOs recommendations address this shortcoming in the pain field by providing clear guidance for the standardised collection and reporting of socio-demographic information across a broad range of equity-relevant characteristics. We contend that by drawing greater attention to the characteristics of study populations, and prompting consideration of inclusivity, diversity and equity, pain research will have more immediate relevance to the people most affected by persistent pain and ultimately be more valuable. E.L.K. wrote the initial draft. All authors critically appraised and edited this letter and approved the final version. E.L.K. is currently supported by The Mayday Fund. E.L.K., T.B., G.L.M. and the ISSHOOs Project received support from an National Health and Medical Research Council (NHMRC) (Australia) Grant to G.L.M. (NHMRC ID 1178444). A.G.C. is supported by an Australian National Health and Medical Research Council Emerging Leadership Investigator Grant (NHMRC ID 2010088). A.C. is supported by grants from the European Horizon 2020 Research and Innovation Programme (Europe), the ZonMw Huisartsgeneeskunde en Ouderengeneeskunde (HGOG) Programme, and the ZonMw Goed Gebruik Geneesmiddelen (GGG) Programme (The Netherlands). S.S. was supported by the John J. Bonica Fellowship from the International Association for the Study of Pain (2021–2023). SS has also received a funding grant from the Medical Research Future Fund, the ANZ Back Pain Clinical Trials Networks and the National Health and Medical Research Council (NHMRC ID 2043354). P.T. is funded by the Canada Research Chair Program. The funders had no role in the writing of this Letter or in the decision to submit this letter for publication. E.L.K. has received speaker fees for lectures on pain and rehabilitation from professional and scientific bodies, and reimbursement of travel costs related to presentations at scientific conferences/symposia. E.L.K. is an unpaid member of The International Association for the Study of Pain (IASP) Global Year 2025 on the theme of ‘Pain Management, Research, and Education in Low/Middle-Income Settings’, the IASP. S.S. has received financial support for travel costs related to presentations at scientific conferences and remuneration for delivery of online lectures. S.S. has unpaid relationships with the following entities: S.S. is a board member for the Pain, Mind, and Movement Special Interest Group of the IASP, and the IASP Global Alliance for Partners in Pain Advocacy (GAPPA). S.S.s is a trainee Editor for Pain Research Forum of the IASP and an Associate Editor for (1) the Journal of Orthopedic & Sports Physical Therapy and (2) Physiotherapy. S.S. is Co-chair of The IASP Global Year 2025 on the theme of ‘Pain Management, Research, and Education in Low/Middle-Income Settings’. S.S. is a member of the IASP, Nepal Physiotherapy Association, and Australian Pain Society. P.T. has received consulting fees to provide independent medical consultation and professional services. He is an independent Committee Member for clinical trial Data Safety Monitoring Boards for FDA-approved trials being conducted by UCB Biopharma GmbH & SPRL, Parexel International, Parahealth Sciences. P.T. is an [unpaid] Chair of the Management Subcommittee of the Executive Committee of a registered non-profit independent medical research organisation, OMERACT. G.L.M. has received book royalties from books on pain and education from: NOIgroup publications; Dancing Giraffe Press; OPTP. G.L.M. has received consulting fees from various sporting organisations; workers' compensation boards; ConnectHealth UK; IOH California; Reality Health. He has received speaker fees for lectures on pain, pain education and rehabilitation from various professional societies; and travel and accommodation support for attendance at scientific meetings from Reality Health. G.L.M. is an (unpaid) board member of the Australian Pain Solutions Alliance and has unpaid scientific advisor roles with the CRPS network and RSDSA. There are no competing interests for any other author.

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